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'Thomas is our Inspiration ' Tomas Martin has never let the fact he's confined to a wheelchair get the better of him. Mum Deb tells Rachel Mainwaring how he's always lived life to the full.

Byline: Rachel Mainwaring

DEB and Phil Martin have nothing but respect for their "remarkable" young son Tomas. Despite spending his childhood in and out of hospital with a debilitating condition which causes constant muscle spasms, he has become an independent young man with huge interest in sport.

The 18-year-old, from Rhiwbina, Cardiff, is already a Welsh National Boccia Champion, a wheelchsair version of bowls, and he has high hopes of taking part in the 2016 Paralympics.

He may suffer from a neurological movement disorder that affects him daily - and was born with hydrocephalus (water on the brain) - but he has never let it stop him enjoying sport and working hard at school.

Deb, a data and events administrator for the Royal College of Nursing, says: "He is a remarkable young man and an inspiration to us. He has never let his condition get in the way of achieving anything. He and dad Phil are both avid Cardiff City fans. They have been season ticket holders for years and go to all the home games with Tomas' nan. He plays Boccia every week and is currently studying for an AS level in PE.

"When he was born, as far as we were aware, everything was OK but when he had his six-week check the GP was concerned that his head circumference was larger than it should be. We were seen at the University Hospital of Wales within 24 hours and told that Tomas had hydrocephalus.

"At eight weeks old, he had to have a device called a shunt fitted to relieve the pressure that had built up. That was the first of many shunts."

Tomas has gone on to have the procedure a further nine times due to the devices failing and has been in and out of hospital for several other procedures.

Deb said: "Tomas seemed to be developing properly and was on his feet by about 18 months but then around the age of two, he started showing some signs that all was not quite right. He had started to have spasms for no reason at all.

"He had many different tests. The hospital consultant was certain Tomas was showing signs of suffering from a neuro muscular movement disorder called Intermediate Non Kinesigenic Paroxysmal Dystonic Choreoathetosis, and that this was causing the muscular spasms Tomas was suffering with daily.

"We have tried several different treatments to help Tomas with these spasms, that can happen anytime day or night. He's had many different scans and several investigations at Great Ormond Street Hospital, plus a long list of medication over the years. He has needed spinal rods due to scoliosis, has had hip surgery to correct a dislocation, but the most difficult and serious was pioneering brain surgery to have an electronic device fitted called a deep brain stimulator, which was done at Frenchay Hospital, Bristol."

This procedure helps to control the muscular spasms and has helped relieve the severity of the spasms but it doesn't stop it happening and he still gets several spasms a day.

Deb said: "The spasms cause Tomas some discomfort and can last anything from 10 minutes to 40 minutes depending how severe they are at the time so it's rare to get a good night's sleep.

"I work part-time and Phil works full-time in business development for a utilities infrastructure company. I suppose you get used to the tiredness. We just get on with it and that's very much how Tomas has lived his life. He's never moaned about any of the difficult times he's had.

"Tomas is a very remarkable young man. He loves all sports, and currently plays a paralympic sport called Boccia. He has been Welsh National Boccia Champion in his category BC4 and he has competed internationally for Wales as an academy athlete.

"He's a determined young man whose ambition is to hopefully be selected to train and play for Great Britain in the next Paralympics to be held in Rio in 2016.

"He not only has a love of sport, he also loves comedy, has a wicked sense of humour and fantastic personality that we all love. He likes to keep up with the trends, he is and always will be an inspiration to us as a family."

Although Tomas has had to endure many different operations, tests and scans, his parents say his courage is something they are very, very proud of.

For several years, they have also received crucial support from the Ty Hafan hospice in Sully, which offers children with life-limiting conditions the chance to mix with other young people, as well as offering parents some essential respite.

For many families, Ty Hafan is not a place where their child goes to spend their remaining days, but instead a place where they can be happy with their families, who also have the chance to have some respite, knowing their children are being looked after and are safe.

"Tomas has been visiting Ty Hafan since the age of eight. His short stay visits over the years have been a big part of our family life. They've allowed us as parents to have a small break, but the fact that Tomas is able to enjoy weekends with his friends, who also visit Ty Hafan for much needed respite and some independence, is really important for any teenager.

"Tomas has made some fantastic relationships with many of the staff at Ty Hafan and has many favourites. The relationships they have with Tomas and his friends are very important to them. To be honest, there is so much we could say as a family about our stays at Ty Hafan, I don't really know where to start.

"The staff and family support are just tremendous.

I could name so many who are very special to us and our thanks is never enough for all they do. The support is always there at the times you need them the most. Although we have had some sad times, there have been many good times that will stay with us forever. The most important to me is that we would not have met many of the families we now call our very dear friends."

THIS Christmas Ty Hafan are asking their supporters to give other families a new beginning by donating to their Christmas Appeal.

For so many families, Ty Hafan is not a place where their child goes to spend their remaining days, but a warm and welcoming place with some amazing staff who make sure that families are able to enjoy every minute of their time together.

Ty Hafan is not about the end of a child's life, but about giving families a new beginning.

And this year, Ty Hafan's Christmas Appeal is asking people across Wales to give other families the new beginning they deserve.

You can donate online at www.tyhafan.

org/newbeginning or call Ty Hafan on 029 2067 2060.

CAPTION(S):

Deb and Phil Martin, with son Tomas who has hydrocephalus, at their home in Rhiwbina, Cardiff Picture: Matthew Horwood
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Title Annotation:Features
Publication:South Wales Echo (Cardiff, Wales)
Date:Nov 21, 2012
Words:1172
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